Profound autism is a classification researchers have proposed for autistic people who share certain characteristics. These include having no or limited language ability, an intelligence quotient (IQ) below 50, or both.
Autism is a neurodevelopmental condition that includes a range of traits. Some autistic individuals have higher support needs than others and may find independent living difficult or impossible.
The terminology used to describe autistic people has changed over time.
Researchers have recently proposed identifying autistic individuals with substantial intellectual and language disabilities as having profound autism. However, the term is controversial, and some argue against its use.
A note about sex and gender
Sex and gender exist on spectrums. This article will use the terms “male,” “female,” or both to refer to sex assigned at birth. Click here to learn more.
In 2021, the
Since the release of the report, some have proposed that profound autism should form a new diagnostic category of autism spectrum disorder (ASD). The category would include autistic people who:
- are non- or minimally speaking
- have an IQ lower than 50
require extensive long-term care
Since 2013, the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, text revision (DSM-5-TR) has combined now outdated categories of autism and grouped them into a singular, broad category instead: autism spectrum disorder (ASD).
Although healthcare professionals do differentiate between levels of ASD in individuals, their diagnoses are based on the amount of support an autistic person requires.
Profound autism would represent a new, distinct category of autism based on specific characteristics.
The proposal to categorize some autistic people as having profound autism is controversial and has led to debate in scientific and autism advocacy communities.
The perception of autism has changed over time. Today, many experts and people accept and embrace the idea of autism as a neurological difference and an identity rather than a disability or a disorder that requires a cure.
However,
People who promote the creation of a profound autism classification argue that it would provide a clinically relevant way to identify autistic people who meet the criteria. This
One 2023 study by the Centers for Disease Control and Prevention (CDC) found that 26.7% of 20,135 autistic children who were 8 years old met the criteria for profound autism. Researchers argue that understanding the prevalence of people with profound autism can help with planning and support and developing and implementing new policies.
Those who are against using the profound autism classification argue that it
The Autistic Self Advocacy Network (ASAN) responded to coverage of the Lancet report, stating that the profound autism classification represents a harmful oversimplification and would likely not translate to service or quality of life improvements.
The ASAN argues that the criteria are redundant, as the results of IQ tests
ASAN also argues that proponents of the classification conflate requiring around-the-clock care with having an IQ below 50 and being nonspeaking.
However, many autistic individuals have an IQ above 50 and are speech-capable, yet also require constant care for other reasons. The profound autism classification does not account for the many other resources and support needs of autistic people.
ASAN further states there is no need for a separate classification of profound autism, as the DSM-5-TR already offers comprehensive diagnostic criteria for autism, including co-occurring disabilities.
Instead, the ASAN suggests the focus should be on improving the services available for all autistic people.
A 2023 CDC study defines profound autism criteria as being non- or minimally speaking, having an IQ score below 50, or both.
Some researchers specify additional criteria, including:
requiring 24-hour supervision and assistance with daily living- having
severe core symptomsrelated to repetitive or restricted behaviors, social impairments, and language and speech difficulties - requiring extensive long-term care
How does the diagnostic process for ASD work?
“Typically, either a parent or caregiver will bring up concerns with their pediatrician or primary care physician, or the physician will bring up concerns based upon findings at a well-child visit.
“Doctors are trained to do these screenings as part of the well-child visit, so your doctor is likely screening for autism without you being aware.
“If there is concern, your doctor may engage in more detailed assessment and may very likely send you to a specialist for either further assessment or for diagnostic clarity.
“Typically, the diagnosis is made based on the input of healthcare professionals, teachers, and the guardians of the child. The earlier this can be diagnosed, the better, because it gets the child into services quicker.”
How can a parent or caregiver prepare for the appointment?
“One of the biggest things that you can do to prepare is to have specific concerns ready and written out — as many details about your concerns as you can present. Simply stating that you think something is wrong may be too vague. Come with examples of times that caused you to pause with concern.
“Having available the history of the child and the pregnancy is helpful. If the individual in question is not a toddler, having that information plus any relevant academic history, such as performance and disciplinary issues, medical history, and social history, can be helpful.”
— Nicole Washington, DO, MPH
Profound autism, or profound ASD, is not an official diagnostic term. A doctor will, therefore, not diagnose someone as having profound ASD.
The DSM-5-TR provides
Determining ASD severity
A
- repetitive or restrictive behaviors
- interests and social communications and interactions
They assess the level of support a person requires for each of the two domains.
There are three possible requirement levels:
- requiring support
- requiring substantial support
- requiring very substantial support
Doctors may also take co-occurring conditions, disabilities, and challenges into account.
A doctor may classify a person’s autism as more severe if they require substantial or very substantial support within each of the two domains.
Various supportive options may help children manage challenges associated with autism.
Support
Therapy and medication can help autistic children manage:
- social and communication difficulties
- behavioral issues
- speech difficulties
- sleep disturbances
- mental health conditions
- co-occurring conditions
The American Psychiatric Association (APA) suggests the following ways for parents and guardians to support autistic children:
- becoming educated on the challenges of autism
- providing consistency with routine and structure
- seeking help from professionals who specialize in autism for specific concerns
- reaching out to support and peer groups, like other parents and guardians of autistic children
- connecting with local autism resource providers and community services
- ensuring they take time to care for their own needs and the needs of other family members
The following organizations provide support and resources for autistic people and their loved ones:
- Autism Society: The Autism Society provides support and resources for autistic people in areas such as healthcare, community services, education, and employment.
- Autism Awareness Center: The Autism Awareness Center provides access to several helpful resources and other relevant organizations for autistic people.
- Center for Parent Information & Resources: The Center for Parent Information & Resources provides resources for loved ones of people with disabilities by U.S. state.
- Easterseals: Easterseals provides services for employment, including skill assessment, training, and communication development opportunities.
- Autistic Self Advocacy Network: The Autistic Self Advocacy Network provides support, information, and resources on various topics linked to autism, including housing options, care providers, self-advocacy, and autism acceptance.
A lack of understanding of ASD and stereotyped social perceptions can be stigmatizing for the autistic community.
Researchers of a
Caregivers who participated in the study reported stigmatization from the public, healthcare professionals, and service providers. Many caregivers of autistic children with high support needs expressed dissatisfaction at the inadequacy of available support and services.
However, the researchers acknowledge that stigma affects autistic people across all support requirement levels.
In autistic people with lower support needs, social stigma can contribute to masking. This is when autistic people attempt to camouflage or change their behavior to try and fit in with nonautistic people.
Masking can be mentally exhausting and
ASD prevalence has significantly increased in recent years. Current research indicates ASD affects around
Despite its prevalence, however, there are several gaps in ASD research, especially as it relates to females; Black, Asian, and Latin people; and low income households.
Studies have found that these groups are consistently underrepresented in autism research. Research gaps can contribute to health inequities.
Studies on female autism research have found the following:
- Autism in females is
understudied . - The prevalence of autism in females is higher than scientists previously believed.
- A lack of understanding of how autism presents in females means they are less likely to receive a timely diagnosis and supportive treatment than males.
- White children are more likely to receive an earlier ASD diagnosis than Black, Latinx, and Asian children.
- Due to this later diagnosis, Black, Asian, and Latinx children with autism receive fewer early interventions during important developmental phases.
- Even when Black, Asian, and Latinx children receive an ASD diagnosis, they have increased difficulty accessing specialty care compared with white children.
Some researchers propose classifying autistic people who meet certain criteria as having profound autism. The criteria include having an IQ lower than 50 and having limited or no speaking ability.
Proponents of this new classification argue it will help identify autistic people who may otherwise be overlooked and who require specific support and resources.
However, others argue that the classification is redundant, as it fails to address the various other factors that may contribute to autistic people requiring additional care and support. They also argue it may lead to further marginalization and stigmatization of autistic people.
Both arguments highlight a need for greater public awareness of autism and better access to support, healthcare, and resources for autistic people and their families.